PATIENT PARTICIPATION IN
MELANOMA CLINICAL RESEARCH
joint MPNE/m-icab and ESO conference
Friday 28th March
Afternoon – Arrivals and registration
Hang your posters in preparation for the poster session on Saturday and start exchanging ideas!
17.00 Invitation to the IN MEMORIAM CEREMONY for Patricia Garcia-Prieto who was one of the founders of m-icab.
This is an independent event organised by Patricia's family but in conjunction with the conference.
19.00 Dinner in Town at 'La Manufacture'
First opportunity to meet the other conference participants
please note that we will organize the following transfers: hotel- ceremony- dinner- hotel and hotel- dinner- hotel. Details available upon arrival at the hotel.
Saturday 29th March
Patient Participation in Clinical Research
9.00 Session 1- Treating Melanoma in Europe in 2014
Treatment options in Melanoma have evolved fast during the last few years and new medicines now provide for the first time hope for patients in advanced stages of disease. This session will provide an overview over the latest treatment options available to Melanoma patients in Europe.
Alessandro Testori, European Institute for Oncology, Miland, Chairman of the EORTC Melanomagroup, Italy
10.00 Session 2- Innovation in clinical research
Improving the availability of innovative new medicines is part of the mission of the European Medicines Agency, the agency responsible for the market authorisation of new medicines in Europe. Collaborative approaches aim to streamline research, licensing and market access, resulting in faster access to promising therapies for patients. Melanoma patients crucially rely on innovation in treatment and drug development; we will therefore start the session with a very personal account of a Stage IV Melanoma patient to understand the humane impact of relying on clinical trials for treatment in advanced Melanoma.
Lori Murdock is a Stage IV Melanoma patient from the UK and will speak about her every personal experience on clinical trials.
Franceso Pignatti, Head of Oncology, European Medicines Agency, EMA
Sarah Garner, CASMI and Associate Director R&D, National Institute for Health and Care Excellence, NICE
11.00- 11.15 Coffee Break
11.15 Session 3- Discussion 'The Melanoma trial of the future'
Patients with advanced Melanoma face a desperate and life-limiting situation which alters their risk-benefit assessment. In a situation with unparalleled therapeutical progress and innovative licensing models that are endorsed by regulators and re-imbursers alike, how should a future Melanoma trial look like and what do we have to do in order to make it reality?
2.30- 13.45 Lunch
13. 45 Session 4- Barriers to accessing innovative care today
Due to cost, clinical trials are effectively presenting the only access to innovative therapies for many Melanoma patients in Europe today. This session will present a clinician's, a health economist's and an epidemiologist's perspective on the problem.
Alessandra Ferrario, London School of Economics, UK, will speak about her research on how health economics influences the access to innovative medicines.
Salvador Algarra, Grupo Espanol Multidisciplinar de Melanom, GEM, Spain, will share his experiences as a Melanoma oncologist in Spain.
Ana-Maria Forsea is a dermatologist, involved in the newly founded Melanoma Patient Network and the founder of the Romanian Skin Cancer Foundation.
14. 45 Session 5- Clinical trial design and a Melanoma patient's reality
A perspective on what really matters to patients and what it means to be systematically excluded from clinical trials. Do current clinical trials capture what matters most to patients and which price are you wiling to pay for a chance of survival?
Teresa Young works on quality of life (QoL) assessment at the Lynda Jackson Macmillan Centre, UK, and will speak about the relevance of QoL assessments, the methods used and how to ensure that the captured date is truly meaningful for patients.
Lesley Kirkpatrick is a medical doctor and will speak about her personal experience in trying to assess innovative treatments for ocular Melanoma.
Marcus Longley, WIHSC and Professor of Applied Health Policy, Wales, is interested in how patients assess risk-benefit and has conducted a study to that respect in patients with genetic diseases. Currently, he and m-icab are planning a similar study for Melanoma patients.
15.45 Coffee Break
16.00 Session 6- Walk the talk. Real-world examples of how to address access to innovative therapies today.
Change requires action, so this session is dedicated to four very different real-world examples of how to ensure access to innovative treatments.
Rob Camp, EUPATI, will tell us how the ECABs, the European Community Advisory Boards of the HIV/ AIDS community, on which m-icab was modelled, changed the way clinical trials are designed.
Arvid Söderhäll from IVA, the Royal Swedish Academy of Engineering Sciences, will present the initiative 'Trials in Swedish Medicine' whose aim is to reverse the trend of a declining number of clinical trials in Sweden.
Rianne Cuijpers is a Stage 3 Melanoma patient who will talk about her decision to work for mytomorrows, a for-profit social enterprise helping patients accessing innovative treatments and share her knowledge about how to access promising treatments as early as possible.
Gauthier Bouche from the Anticancer Fund will speak about the foundation's approach to systematically investigate promising but not necessarily lucrative therapeutical avenues.
Summary of the day and introduction to the poster session- Bettina Ryll
17.30 Mix and Mingle
Reception and Poster session 'IDEAS WORTH SHARING in MELANOMA'
Most of us got involved in advocacy because there is a specific problem in the entire experience with Melanoma that we want to see change. This is the opportunity to present YOUR idea for a Melanoma patient advocacy project- it can be something that you have done in the past, that is ongoing or an idea you are working on. Share your good ideas to inspire others!
Conference participants will vote for the best advocacy idea and we are currently exploring funding options to turns this idea into a concrete project to be rolled out across Europe.
Never prepared a poster? Don't worry, this is about the idea, not the presentation and further information is available under: POSTER SESSION FAQs
Have already prepared material- like leaflets, stickers, brochures...- for your action? Bring samples along!
19.30 Dinner at the MARIVAUX HOTEL
Sunday 30th March
Patient Advocacy Day
8.45 WELCOME BACK
9.00 Session 7- A European Platform for Melanoma Patient advocacy
Melanoma patient advocacy across Europe is fragmented which hinders the exchange of know-how and best practices and prevents us to address European problems efficiently.
The newly founded Melanoma Patient Network Europe aims to address this issue but we need to discuss how to use it most successfully to address problems of the Melanoma patient community.
Francesco de Lorenzo, president of ECPC, will speak about how to re-shape EU health policy in Melanoma.
Bettina Ryll, m-icab, will present her vision on Melanoma patient advocacy in Europe and for the newly formed Melanoma Patient Network Europe.
9:40 Session 8- Network activities for 2014/ 2015: Turning ideas into action
Moderation: Jean Mossman
Jean is a seasoned patient advocate with a very clear concept on what it takes to turn an idea into a successful advocacy action and she will share her insights and experiences with us.
Prepare for an insightful session with lots of useful advice on how to make sure that YOUR idea has the impact it deserves.
We will start with a general concept about advocacy by Jean Mossman, a brief introduction to what it takes to make a project successful (to be taken up in detail at a later time-point) by Rob White and then plan together how the idea that we voted the winner of the poster competion 'ideas worth sharing in Melanoma' can be turned into a European Melanoma advocacy project.
We will then present our planned network activities for 2014/ 2015 and how you can get involved.
12.15- 13.30 Lunch
13.30- 15.00 Session 9- Network activities: The network in action
The second part of our network activity sessions will then focus on how the network can help you to realise your Melanoma advocacy ideas.
Be believe that the currently existing network of Melanoma advocates already has an enormous shared wealth of expertise and knowledge. We will start with a short introduction how you could get help from the network but then decided to actually profit from the opportunity of this conference- a lot of Melanoma advocates in one place!- to demonstrate the existing power of the network.
We therefore created a FOCUS on session during which we will discuss a very concrete and specific problem. This year's session will be-
FOCUS on Romania
In the preparation for this conference we have noted large differences in terms of existing Melanoma advocacy between European countries- while some have extremely active Melanoma associations, others entirely lack national organisations.
M-icab has been approached during the last year by a number of Romanian Melanoma patients, family members and professionals for support and advice on how Romanian Melanoma patients could gain more efficient access to information and treatment.
We have therefore decided to activate all our professional and personal networks- a great thanks to all those of you who helped with that, you know who you are!- to bring together a group of Romanian Melanoma advocates at this conference who will be asked to prepare a short description of their challenges and a number or questions they would like to ask YOU.
We know that many of you have years of experience in Melanoma advocacy, so your insights will be extremely valuable.
We would like to make this session a tradition, so if you have ideas for next year's session, let us know!
Workshops- 90 min
Thanks to the willingness of two organisations to share some of their advocacy experience, we are able to offer two training workshops for patient advocats:
Workshop 1: How to provide reliable information for patients
by Catherine Poole, MIF
Catherine founded the Melanoma International Foundation after her own personal experience with Melanoma and not being able to find trusted information or the reassurance she needed.
She and her team have created an extremely valuable source of information for Melanoma patients, both in form of webinars on the latest advances in therapies as well as a supportive, moderated patient forum. We all know that there is a lot of incorrect information out there for patients, so trustworthy information is one of the topics close to Catherine's heart and she will share how she ensures that patients can trust the information the MIF provides.
Workshop 2: Advocacy that makes a difference- hands-on advice on how to engage efficiently
by Mihaela Militaru, ECPC
Mihaela, currently the director of the European Cancer Patient Coalition, will share her experience with political engagement on the European and also the national level (in Romania) and will provide patient advocates with the necessary DOs and DON'Ts to ensure that advocacy efforts reach their goals.
16.45- ca 17.30 Meeting summary and closing remarks